Listening to the Caregivers

In developing the NFCSP, AoA conducted a series of roundtable discussions with caregivers of older persons who have chronic illnesses or disabilities. These discussions were held in more than 30 cities across the United States, and allowed AoA to gain a more complete understanding of the day-to-day challenges faced by families caring for their older relatives, and to obtain additional insights into the types of services and supports that would respond to the needs of these and other caregivers. It was clear after listening to these caregivers that respite is a necessity. Here’s what some of the caregivers told AoA:

“I took a vow when we got married 54-years ago, and I intend to carry it out. My only fear is that I will die from exhaustion before she does, and who will care for her then?”
-- Caregiver husband; Chicago, IL

“It has been a challenge going through this alone. To be able to have someone help me . . . for just one-half hour or one hour to put her [mother] in bed, or get her up in the morning . . . this would be helpful.”
-- Caregiver daughter; San Francisco, CA

“Respite is my number one need. I’ve been caring for Mom for seven years . . . in that time, I have had one vacation for 3 days.” -- Caregiver daughter; Milwaukee, WI

Many caregivers noted hardships and problems including physical and mental strain and feeling burned out or overwhelmed. Some felt they did not have enough time or energy to meet the demands facing them and that caregiving takes away from their personal lives. AoA, through the state and area agencies on aging (AAA), adult day care centers, and some community- and faith-based organizations, offers respite services to caregivers. The degree and types of respite services offered are discretionary in each state and often vary widely from state to state.

The National Aging Network

Under the authority of the Older Americans Act, AoA leads a national aging network to plan, coordinate, and provide home and community and faith-based services to meet the unique needs of older persons and their caregivers. AoA’s aging network includes: 56 State Units on Aging, 655 Area Agencies on Aging, 236Tribal and native organizations representing 300 American Indian and Alaska Native Tribal organizations and 2 organizations serving Native Hawaiians, plus thousands of service providers, adult care centers, caregivers, and volunteers.

Who to Contact for Help

local AAA is one of the first resources a caregiver should contact when help is needed. Almost every state has one or more AAA, which serve local communities, older residents, and their families. (In a few states, the State Unit or Office on Aging serves as the AAA.) Local AAA’s are generally listed in the city or county government sections of the telephone directory under “Aging” or “Social Services.”